Parents of autistic support group highlight critical need for services

By Laura Lyne

PARENTS of the Tallaght Parents Autism Support Group (TPASG) have highlighted the “critical” need for services and interventions for children with autism throughout Tallaght, as an autism registry was launched earlier this month for Kildare and West Wicklow.

The registry was launched by Minister for Children and local Independent TD Katherine Zappone, and will generate a database highlighting the number of children waiting to be diagnosed, access to clinical services, preschool access and the route for parents to take following their child’s diagnosis.

Lynn Byrne, who is an administrator with the TPASG and whose son Glen (12) is autistic and non-verbal, welcomed the news of the register and hopes it will be expanded to include South Dublin and the local Tallaght area.

She told The Echo: “We’re at crisis point now, we have no support, the lists are endless. I have a 12-year-old, who cannot speak, who has been in the system for the past 10 years trying to get services.

“Glen has never had a consistent flow of therapy. As he’s becoming a teenager, it’s becoming harder to manage.

“I wouldn’t envy anybody that’s entering the system now, a lot of families can’t even get an official diagnosis.

“There’s no clear road map for families, it’s really at a critical level with some families being left nine months waiting on an appointment, that’s if they’re lucky enough to be accepted into clinical services.

“The new autism register is welcomed by the TPASG, and we want to highlight the local struggles we are having in Tallaght.”

Aishling Smith has two children with high-functioning autism, Caoimhe (10) and Brendan (11) and says that families are being “denied by the state”.

Aisling told The Echo: “It’s unbelievable. For the past three years, I’ve been back and forth trying to get a proper diagnosis, trying to get therapy.

“We get nothing because of the diagnosis of autism. Therapies have been cut because of the diagnosis of autism.

“It’s meetings about meetings, and then the computer says no and nothing is done by the HSE. A child with autism is written off, and the parents are given no advice.

“Families are isolated because of the diagnosis, we’re all stressed and we’re all in the same boat, and we’re all fighting for services.

“I find it very hard to believe that anything will be done because of this register. It just seems that once you get an autistic diagnosis, you’re denied everything by the state.”

Leoin McCarney has a 4-year-old son named Josh who was privately diagnosed with autism but is not being officially recognised by the HSE.

Leoin told The Echo: “We had the red flags, and 15 minutes after we walked through the door with the private appointment, he was diagnosed.

“Josh has had no treatment so far. I was told I needed to do a parenting course to cope, that he wasn’t speaking because we had his sister 18 months after he was born and it was too soon – the information that we provided was just thrown back at us.

“There is no system. They say early intervention is important, but they’re not doing anything about it. We can’t even fight it, we’re just fobbed off.

“Families are jumping through hoops and being denied support. There’s so many costs around it all.

“I think this register will be a fantastic idea, if it is used properly. It’ll identify where services are needed and show what’s needed in the future.”

Further information about the Tallaght Parents Autism Support Group and the support it provides to parents of children with autism can be found at www.tpasg.com